On the way back from a shopping trip today I had an absence seizure with I am told lasted just over 10 minutes. Now my carer is use to me having all different kinds of seizures, passing out, not knowing what year it is, how old I am, becoming partly paralysed, but she had never been around for this before so as she was driving us home and I started to ignore her she wondered what was happening as she said "I was staring into space with the same expression on my face".

She said she pulled over to check I was breathing and my lips were not going blue because I was just so none responsive.

After she checked in with my husband she set off back on the road home when I came round and wanted to know how on earth we had got to the high street from the stadium, she said "oh your back" and told me the tale laughing with relief.

It is funny how someone can be so use to all you mad symptoms and now what to do in every situation and not have seen one of them in 4 years.
It goes to show I have the right people round me though as she did not sound like she panicked and simple pulled over to check on me, called my husband to check she was doing the right thing as it was new to her and felt right to continue to drive home.

The Northwest have a IIH regional group that I set up in 2012 have their first meet up that year. It was a great turn out and for many was the first time they had meet others with the condition.

From here the group continued to meet at different towns around the northwest with a solid core group in attendance and others coming and going as they felt they needed the support or it was close to them. Parents, friends and children also came along making it a true support and friendship group.

Due to IIH and other conditions I have been unable to arrange meet ups for a while, then Covid kicked in. Other in the core group will help once we feel ready to meet up again and if my memory and health on the day is good enough I can attend. 

After different treatments I was offered Botox as a preventative treatment to my headaches and migraines.

I had to complete a headache diary for 3 months, reduce the pain killers not that I took them regular as I am a firm believer in them causing headaches and problem if taken to often.

The Botox entails 31 small injections just under the skin, starting at above eye brows going over the scalp and the last 4 in the neck. It is very quick and can sting. Some hurt a little more than others, for me near the greater occipital nerves but of course each of us will think differently on this.

After it has been done it can bring on a migraine but it is not a given and once it starts to work you should feel the headaches reduce is pain scale and frequency.

For me one large bonus was the reduction in scale pain.

The procedure is repeated every 3 to 4 months now and I can tell when it is due. 

Every day someone will ask how I am and you don't want to bother them with the truth of the pain you are in or the and fatigue, so you go ahead and say "fine thank you," "not to bad today thanks" or "so so" but every now and then someone will want to know how it is really and the best way to describe it is in spoons.

Yeah that's right spoons.

Christine Miserandino has a condition called Lupus which makes you extremely fatigue and to help explain to a friend about her daily life she created the Spoon Theory which can be found in full at www.butyoudontlooksick.com.

Christine explained to her friend that she starts the day with a set number of spoons and each task cost a spoon, you have to think about each thing you do as you many run out or need extra for tasks if you get ill.

I recommend everyone reads the spoon theory as I think it will benefit a lot of people if people understand this side of chronic illness.

From now on if you hear someone say I am out of spoons, I need an extra spoon or refer to themselves a spoonie, you will understand why.

Send spoons !!!

Pace yourself, I often hear this and in theory it makes total sense but is it practical in everyday life?

When I was first diagnosed with Fibro I attended a Fibromyalgia course at the hospital and part of this was about pacing but putting it in to practice is another matter as I find as soon as I stop I crash, so use to push through to get things done.
Now the idea of pacing is to stop the crash so maybe I did do too much first, but life does not stop while we rest, appointment times still need to be met and for those with children who are always on the go I am unsure how you manage but my hat goes off to you.
As each condition is diagnosed pacing is mentioned and I do try, it is very much related to the spoon theory. I sleep after my shower, if I have been out the house or concentrated on something for a while I need to sleep.

I am going to give pacing more thought.

My vision is awful, very dark and the bit I have is blurry. It is mainly my right eye that is effected but the left isn't great.

It started just before bed and was worse this morning so I phoned the optician for an emergency appointment but I couldn't get in. Covid has changed squeezing people in.
As I needed to be seen we phoned a different optician who where able to see me after an over the phone triage so we went as soon as my carer came at 12.

They did the appointment as a medical assessment, rather than an eye test which was ideal. Due to this he solely looked at the problem, looked at the back of my eyes, took an OCT and concluded there was no damage or swelling.

This was just what I needed to hear. I have a history of papilledema (swelling to the optic nerve at the back of the eye) and if this had returned I may have needed a lumber puncture to reduce the pressure around my brain, in my CSF. One of the things i fear is the possibility of losing my vision and needing surgery that could help but also has a high failure rate.

We decided the vision was probably due to a migraine with mainly being one sided but could also be FND related. 

Today I was getting my therapy down on the veg patch with my amazing carer, she was pottering close by after making sure I had everything I needed to weed a raised veg bed and I was leisurely doing a little when someone walked past the fence and said "awww" to her friend as she saw me.

In the past this would have really brought me down as I sometimes felt stuck in my wheelchair unable to move freely with body parts that don't work on command but now it made me smile thinking how it made her day to see someone getting out and doing something which is what I was doing, it's a great space for it.

In reflection maybe the awww could of been kept internal in case it did offend someone but a nice smile, a hello, keep up the good job all great ways of acknowledgement. 

After a walk out with my amazing carer we hit the age old problem of a car blocking the pavement. Now this was not part on the pavement to allow room for traffic on the road and room on the pavement which I did do when I was a driver but fully on the pavement leaving no room for pedestrians, prams or wheelchairs. This left us in the position of having to go on to the main road to get round and up again after the car. Lucky enough a kind man helped with the traffic and large curb which we were grateful for but this put 3 of us in danger for no good reason.

I spoke about this on a local group and although most people sympathised with what I said a few took exception and thought I was using my disability so there I don't think issues like this will ever stop when people can't see beyond there own noses.

We also encountered the same the day after on a side road and that was with the driver seeing us walking up the street.